[Kimberly]

in reply to: Accepting Graves #1172964

Hello – I know there are some other members here who have been through similar situations, so I hope they will check in and give you some advice. In the meantime, you might use the “search posts” feature to look for old posts with keywords “wife”, “girlfriend”, “divorce”, etc..

Unfortunately, Graves’ disease can definitely cause complications that puts a huge strain on relationships. Here is a bulletin that describes some of the effects:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

It sounds like your girlfriend is taking anti-thyroid drugs, which can take a few weeks before you fully see the effects. And even after that, the symptoms sometimes linger until the body has really had a chance to heal. However, they *can* restore her to good health, and hopefully, she will have a change of heart when she starts feeling better. We actually counsel patients to NOT make any major decisions on relationships, major purchases, moving, etc. until they are feeling better. We would be happy to communicate directly with your girlfriend if she’d like to e-mail us at info@gdatf.org.

Wishing you all the best.

[Kimberly]

in reply to: confused and need help #1172960

Hello and welcome to our forum. We are fellow patients here, not doctors, but here are a couple of thoughts…

1. If it was me, I would go back to the referring doctor, let them know what happened, and ask them to *call* the endo’s office to explain your situation. It might be that a member of the office staff at the endo’s office didn’t completely understand the reason for your requested referral.

2. No, you aren’t crazy, and no, the “bad” days are *not* a figment of your imagination – but they might or might not be thyroid-related. Getting back in to see an endo would be a first step in confirming or ruling out thyroid issues. Keeping a very specific symptom log on a day by day basis might help your doctor put the puzzle pieces together and figure out what is going on.

3. I know that you are tired and frustrated, but PLEASE be persistent until you find a doc who will give you the care that you deserve. If the endo that your FP referred you to doesn’t seem to want to help, other referral sites are available at the following sites:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

American Thyroid Association
http://www.thyroid.org/

On the ATA site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.”

American Association of Clinical Endocrinologists
http://www.aace.com/

On the AACE site, click on “Find an Endocrinologist” link on the right-hand side of the screen. (You might have to scroll down a bit to see it). Be sure to select the specialty “thyroid dysfunction”.

Take care – and please check back to let us know how you are doing!

[Kimberly]

in reply to: New to the Site #1172948

Just a quick clarification that I did lose weight with WW, became a leader for the organization, and maintained for several years. It wasn’t until after my Graves’ diagnosis that I started having problems with weight creeping on that I just wasn’t able to lose.

The new WW isn’t working for me anymore, but to be fair to WW, the *only* thing that’s worked in the last few years is to restrict my calorie intake to the point that I was literally hungry all day…which I’ve decided I’m not willing to do anymore, and I certainly wouldn’t recommend to anyone else.

Some thyroid patients have no issues with weight…and others have temporary issues with weight gain, but traditional weight loss programs seem to work just fine for them. Unfortunately, I’m not in either of those categories! Your mileage may vary.

[Kimberly]

in reply to: My Ears … #1172950

Hello – I’m not familiar with a specific connection, but have you mentioned the ear issue to your doctor? It looks like you are getting treatment for the allergies, but it’s certainly possible that this is an unrelated issue that you will want to get checked out.

Take care!
Kimberly

[Kimberly]

in reply to: New to the Site #1172944

Hi Heather – We’re fellow patients, not docs. But if I was experiencing symptoms that significantly impacted my life, I would personally want a new set of labs ASAP, rather than waiting.

As for the WW, I know of some patients who have had success with the new program, but I personally didn’t. They often run specials where they will waive the joining fee, so you can always try it out for a week or two without a significant investment.

Take care!
Kimberly

[Kimberly]

in reply to: Riding the roller coaster #1172937

Hi Debbie – So sorry that you are dealing with all of this.

Since you have an appointment coming up fairly soon, it would be helpful to keep a detailed log of the symptoms you are describing. This could potentially help the docs as they decide on next steps with your dosing regimen.

In the meantime, you might start looking for referrals for an experienced ophthalmologist who can evaluate your eye issues. Thyroid Eye Disease is unfortunately mostly “watch and wait” until the disease stabilizes, but it would be good to get an expert in your corner.

Please keep us posted!

[Kimberly]

in reply to: Just dropping in after TED orbital Decompression #1170539

Wow, I am so sorry to hear of all that you have been through! Thanks for sharing your journey.

By the way, I am going to edit the link in your post so that it goes to the correct site. The original link had “wrod” instead of “word” and re-directed to a survey. (If other readers would like to open the link, I suggest right-clicking to open the blog in a new window. Otherwise, if you forget and close out of the blog, it will kick you out of the forum, and you will need to log in again.)

Take care — I hope that you are finally back on track to re-claim your health…and your life!

[Kimberly]

in reply to: Labs After Thyroidectomy #1172915

@Alexis – My understanding is that T4 has a “half-life” of approximately seven days. This means that when you take a dose of meds (or your body produces some T4) today, half of that amount will still be in your system in 7 days…one-fourth will remain in 14 days…then one-eighth will be left in 28 days. So it should take a few weeks to fully see the results of any type of change (starting meds, changing dose, etc.). Take care!

[Kimberly]

in reply to: New to the Site #1172942

Hello and welcome to our forum. Yes, this journey is often a “two steps forward, one step back” type of process. HOWEVER, since your symptoms are obviously significantly impacting your quality of life, I would suggest calling your doctor’s office and telling them you would like a new set of labs ASAP. Everyone responds differently to Methimazole, and you definitely want your doc to adjust the dose before you head into hypO territory. It sounds like you are doing a great job of documenting your symptoms, and I would mention *all* of these you your doctor. The more specific you can be, the better. “I need a 3-hour nap to get through the day” is more helpful to a doctor than “I’m tired”.

By the way, your husband might find this bulletin interesting. It’s called “An Open Letter to Husbands Of Graves’ Patients” and was written by the spouse of one of our former volunteers:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

Also, if you do a search for “weight” using the search posts feature in the top right-hand corner, you can see that this is a concern for many patients. Having experienced this issue myself (and as a former Weight Watchers leader!), I personally believe that for many of us, there is more to the equation than simple calories in, calories out.

Take care – and please check back to let us know how you are doing!

[Kimberly]

in reply to: Rituximab #1172922

Hi Jennifer – As Shirley mentioned, the studies so far are small, but encouraging. Here’s a summary of one:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/patients/ct/volume3/issue8/ct_patients_v38_9_10.html

Wishing you success with this treatment…please keep us posted on how it goes!

[Kimberly]

in reply to: Labs After Thyroidectomy #1172910

Hi Alexis – We can’t provide specific dosing/prescription guidance, but if you are experiencing symptoms, it doesn’t seem it would hurt to get FT3 tested just to see where you are!

TSH is something of a “running average”, while T4/T3 are more “point in time” measurements.

By the way, you’ve done a good job of documenting specific symptoms…have you shown these to your doc?

Take care!

[Kimberly]

in reply to: Feeling Harvested? #1172908

tnapavlu wrote:

When they removed my thyroid I was told my antibodies would either go dormant or look for something new to “attack”, is this true?

Hello – As Bobbi said, antibodies operate on a “lock and key” type of system, but there are other areas that the Graves’ antibodies can impact. Eye involvement is fairly common in Graves’ patients, and there is a more rare skin condition called pretibial myxedema that can affect the front of the shin. There is also a much, MUCH more rare condition called acropachy that involves clubbing on the fingers and toes.

If you are experiencing other symptoms, though, it’s certainly worth checking out whether a different autoimmune condition might be responsible.

Take care!

[Kimberly]

in reply to: New yearly ish update #1172900

Thanks for the update! I agree with catstuart7 that 50-60 mile bike rides is super impressive! I can’t recall if I gave you this link previously, but you might be interested in this coast-to-coast bike ride which is raising funds and awareness for Graves’ disease. The riders left Boston, MA on May 26th and they are a little over 2 weeks away from the finish line in San Francisco!

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://greaterthangraves.com/

Take care!

[Kimberly]

in reply to: thyroid and eye disease #1172308

Hi Shirley – This is a reading list for physicians, but the Wiersinga/Kahaly book at the very bottom of the list is really well written. Each chapter is in a Q&A format, and while there is some medical jargon, most of it is very readable for a lay person.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/about/about-graves-disease/reading-list-for-physicians/

Take care!

[Kimberly]

in reply to: thyroid and eye disease #1172306

Hi Shirley – This isn’t one of the books on the GDATF’s reading list, as that list only includes books written by doctors. However, I let the above post go because one of the eye docs who spoke at a past conference mentioned the book.

Certainly, any recommended therapies in the book that seem to be “off the beaten path” need to be thoroughly researched first and administered by an experienced physician.

[Author]

Posts